[jas174]

CLOFARABINE! Cheryl, We are pretty sure this is the drug my husband will get very soon. We do have to stay during the treatment of 5 days. His induction chemo brought the blasts down quite a bit, but not enough, they are creeping back up. Dr. wants to use that drug, then go directly to a cord blood transplant. A visit to the Dr. on Feb.7th will tell. I have many questions to ask…don’t know where to start. It seems that if no questions are asked, no info is given other that a general explanation. It is so encouraging to see that your Dad is doing so well with it. It gives us hope. Prayers for you and yours and us!! Thank you! ————————————————————————-Husband 61,MDS 9/06. 6 rounds Vidazamonths then dacogen,danazol,revlimid etc.no response. 12/07 transformed to leukemia, very high blasts, waiting for a plan and cord transplant. Praying hard.

[jas174]

Katie, My prayers for you and your family. You have given your best, you are a credit to him. May God help you and your family through all of this.

[jas174]

Dr. visit this week has changed the treatment plan due to blasts increasing from below 5% (now at 55%) after induction chemo Dec. 8th. Dr. says now, second round of dacogen in 3 weeks, then, clofarabine for 5 days, then, right to the cord blood transplant. A reality check we weren’t expecting! We are overwhelmed, thought he would be in remission for a while. Very scary, but the Dr. is great, caring, positive and very experienced. A wonderful thing is, every Dr. visit, I meet another of his patients who sing his praises and give encouragement. Any suggestions for what we should get in order before the transplant? Thank you for all your great input and suggestions. jas ————————————————————————————-Husband 61,MDS 9/06. Vidaza CR for 6 months, then Dacogen, Danazol, Revlimid etc. No response. Now, 12/07 transformed to AML, 1st INDUCTION CHEMO done….BMB showed less than 5% blasts. Now at 55%, Will get treatment with clofarabine, then cord transplant. Hoping and praying..

[jas174]

Hello Carolyn,
It looks as if it is common to develop MDS after previous chemo. Like Jack said, the original disease treatment causes a worse disease! My husband had NHL, was treated with CHOP and a few years later developed MDS. That progressed to RAEB, then to AML. He is doing well, recieving treatment, waiting for a BMT in the spring. It looks like you found the right place for support and information. There’s great, caring people here. All the best to you and him! Prayers coming your way. jas

[jas174]

KLS, Thanks for that tip. As it turned out, We didn’t go…too bad a storm. I will save your info for a later date…I am sure we will be doing that again soon. Our local Hematologist/Ocon.said he would administer the dacogen there. Great! So we just go to the big city tomorrow for a follow up with the experts. Any little thing that makes life less complicated is welcome to me. Thanks again —————————————————————-Husband 61,MDS 9/06. Vidaza CR for 6 months, then Dacogen, Danazol, Revlimid etc. No response. Now, 12/07 transformed to AML, 1st INDUCTION CHEMO done ..BMB showed less than 5% blasts. Dr. will do 3 rounds of Dacogen, hoping for BMT in spring.

[jas174]

jack, his blasts are below 5%, but still some circulating in blood and on liver. His counts went down to .005 wbc, about 8 days to come back. No mention of consolidation from Dr., only the dacogen. I’m sure things will change depending on response. Like your wife, he has the AML (MDS) caused by previous chemo. There is one adult donor from Germany and a cord available. We go tomorrow for a 3 day stay for the dacogen 1st round. Hospital is about 60 miles away…snow storm in the morning! Should be interesting. Thank you for your wonderful information and good wishes. We live in hope. jas

[jas174]

Dacogen will start tomorrow (with 1 dose Hydrea) for 3 days…1st round. When Dacogen was tried several months ago, our local Oncologist wouldn’t do another round because after nadir,the counts wouldn’t come back after 6 weeks. He got infections, fevers etc. That was when he had RAEB2, Now it’s AML and a different Dr. at new England Med Ctr. Boston. I am sure the plan is subject to change at any time, but for now…that’s the plan. He has blasts in his blood and on his liver, so can’t do radiation on the liver. Your wife, by comparison, is getting a heavy dose. Is she at home? How do you manage the blood tests, transfusion etc. with the Hosp. so far away? All the best, all the prayers for her. jas

[jas174]

Husband will start Dacogen for 3 day cycle next week. The plan is 3 days Dacogen, 4 weeks off for 3 cycles. First induction brought blasts down below 5%, but Dr. is hoping for even a better reponse before transplant in the spring. Has been in and out of hospital with fevers etc. and is stable now, so time to start. I am very afraid of the Dacogen…6 mos. ago, had one round and counts bottomed out and wouldn’t come back, so Dr. discontinued. It’s such a scary journey through this, I try to be positive and reassuring for him, he is such a trooper, never complains. —————————————————Husband 61,MDS 9/06. Vidaza CR for 6 months, then Dacogen, Danazol, Revlimid etc. No response. Now, 12/07 transformed to AML, INDUCTION CHEMO done 1st round..BMB showed less than 5% blasts. Dr. will do 3 rounds of Dacogen, then BMT in spring.

[jas174]

Hello, No problem getting on here. I had mt password saved and the login is automatic…I just clicked the link and it took me to the new location. All my prayers and best wishes to patients and caregivers for a New Year filled with hope and love. We are all somehow connected by this awful disease and I am grateful for this forum to read, ask, discuss issues. It helps so much. Thank you all. ——————————- Husband 61,MDS 9/06. Vidaza worked for 6 months, then dacogen, danazol, revlimid etc. no response. now, 12/07 transformed to AML, very high blasts, finally,a plan.. (INDUCTION CHEMO)done 1st round..waiting for a BMT and praying, praying and more praying.

[jas174]

Yes, The Dr. is also reassuring and confident. His team of Drs. (interns) were wonderful to him…they have moved on and a new group begins. The wbc is down to 0.5…scares me, but was expected. He has less bone pain, but some gastro problems. BMB in a few days will tell a story. Merry Christmas to you and yours, hope the New year brings good health and happiness.————————————————————– Husband 61,MDS 9/06. Vidaza worked for 6 months, then dacogen, danazol, revlimid etc. no response. now, 12/07 transformed to leukemia, very high blasts, finally,a plan.. (INDUCTION CHEMO)done 1st round..waiting and praying.

[jas174]

So sorry for your great loss. You and your family are in my prayers. jas174

[jas174]

The plan is MEC without the “M” and extra “C”. Dr. wants to protect the heart. 1st infusion today and 6 more days. Maybe, if effective, he will be home in several weeks and if another round is necessary, he goes back in. He says we talk transplant later, remission first. We are so fortunate to have such a great Dr. treating him. So, we start and pray. Your wife (and you) have been through so much already, almost 2 yrs. She must be a determined woman! Take care, ————————————————————Husband 61,MDS 9/06. Vidaza worked for 6 months, then dacogen, danazol, revlimid etc. no response. now, 12/07 transformed to leukemia, very high blasts, finally,a plan.. (INDUCTION CHEMO)

[jas174]

The Drs. are still trying to find the source of repeated infections. He is getting a lot of infusions of antibiotics. The heart problem is damage from Chemo years ago, ejection fraction is 40%, considered mild problem and started on meds. for that. The liver biopsy came back to show leukemia cells were the “spots”. Dr. says not to worry, chemo wil kill them too. Not really bad so far. Most tests are done and the team will have a plan for him soon. I am grateful, it could be SO much worse. The Drs. and nurses are great. Now, just the waiting. How is your wife responding to treatment so far? Any closer to the transplant? The only thing I can think to do is PRAY, PRAY PRAY for all of us. __________________________________________________Husband 61,MDS 9/06. Vidaza worked for 6 months, then dacogen, danazol, revlimid etc. no response. now, 12/07 transformed to leukemia, very high blasts, waiting for a plan and treatment.

[jas174]

I must have hit the wrong key…what I meant to write, was that he has transformed to leukemia and after doing numerous tests, a CT scan showed “spots” on his liver, so a biopsy was done for that, fevers continue, his echo shows some heart damage from previous chemo and crackles in his lungs. None of these things were diagnosed at our local Oncologists clinic. The last I was told, the plan is Chemo and the transplant is not ruled out for now. I will see the Dr. tomorrow Does anyone have any questions I might ask? Right now, I am very worried and can’t seem to think of anything else but getting back and forth to see him. ————————————————— Husband 61,MDS 9/06. Vidaza worked for 6 months, then dacogen, danazol, revlimid etc. no response. now, 12/07 transformed to leukemia, very high blasts, waiting for a plan and treatment. Praying hard.

[jas174]

Well, it seems after a bone marrow biopsy at N.E.M.C.

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